Patient Information and Notes from the
Institute for Molecular Medicine and
the Morgellons Research Foundation

Morgellons syndrome or ‘fiber’ disease has been characterized by unusual skin wounds, fibers and specks that appear to be extruded from the skin along with peripheral neuropathies that are described as itching or crawling feeling under the skin. According to the Morgellons Research Foundation (http://www.morgellons.org/casedef.html), Morgellons can be characterized by six major signs and symptoms:

1. Skin lesions, both spontaneously appearing and self-generated, with intense itching. The former may initially appear as “urticarial-like”, or as “pimple-like” with or without a white center. The latter appear as linear or “picking” excoriations. Even when not self-generated, lesions often progress to open wounds that heal abnormally and usually incompletely. (e.g., heal very slowly with discolored epidermis or seal over with a thick gelatinous outer layer.)

2. Crawling sensations, both within and on the skin surface. Often conceptualized by the patient as “bugs moving, stinging or biting” intermittently. Besides the general dermis, may also involve the scalp, nares, ear canal, and body hair or hair follicles. The sensations are at times related to the presence of easily seen insects, arthropods, and other human and non-human-associated parasites that require serious attention from the treating clinician.

3. Fatigue and weakness significant enough to interfere with the activities necessary for daily living.

4. Cognitive difficulties, including measurable short term memory and attention deficit, as well as difficulty processing thoughts correctly. Described by patients as "brain fog".

5. Behavioral effects are common in many patients. Many have been or will be diagnosed as Attention Deficit Disorder, Attention Deficit Hyperactivity Disorder, Bipolar Disorder, or Obsessive-Compulsive Disorder. Almost all, if previously seen by well-read physicians without prolonged observation, will have been labeled as “Delusional Parasitosis”. A temporal relationship to skin lesion onset is not known.

6. Presence of “Fibers” in and on skin lesions. They are generally described by patients as white or black, but clinicians also report seeing blue, green, red, and other fibers, that fluoresce when viewed under ultraviolet light (Wood's lamp). Objects described as “granules”, similar in size and shape to sand grains, can occasionally be removed from either broken or intact skin by physicians, but are also commonly reported by patients. Patients report seeing black “specks” or “dots” on or in their skin, as well as unusual 1-3 mm “fuzzballs” both in their lesions and on (or falling from) intact skin.

Other signs and symptoms include: changes in visual acuity, balance problems, bloating and swelling of legs, neurological symptoms, including changes in mood and personality, painful extremities, tinnitus, gastrointestinal symptoms, skin sores that do not heal, changes in skin pigmentation and texture and other changes, arthralgias or arthritis-like symptoms, sinus problems, breathing problems and chronic infections (Borrelia burgdorfi or Lyme Borrelia, Mycoplasma species, among others) or skin parasites. In addition, many patients have co-morbid conditions, such as Chronic Fatigue Syndrome, Fibromyalgia Syndrome or Sarcoidosis. Often patients with the Morgellons Syndrome are thought to be delusional, or they are accused of self-inflicted skin lesions. Thus obtaining appropriate medical assistance is often a challenge, because most practicing physicians have little knowledge of new or emerging illnesses that may be outside of mainstream medicine.

Patients who do not have medical assistance or are trying to augment the treatment they are receiving may want to consider the following information below developed from anecdotal studies and patient feedback. The regimen described is only suggested for patients, and it is intended for long-term use and requires daily maintenance. The suggestions below may or may not help suppress your Morgellons, and the information is not intended to replace a physician’s care or instructions. There is no known cure for Morgellons, and new information in the future may change the suggestions below.

This suggested regime must be adjusted to individual patients, the stage of the illness and co-morbid conditions. Consult with your physician in order to determine the most favorable approach. Recovery from Morgellons is very gradual and varies from patient to patient. Often patients’ signs and symptoms become worse before they slowly get better. The first treatment consideration is general diet and dietary supplements.

1. Diet is important. Most patients do not consider diet important, but it is quite important in all chronic illnesses. The Institute for Molecular Medicine has posted some dietary advice on its website under Treatment Considerations (http://www.immed.org/).

2. Vitamins and Minerals are imperative. Most chronic illness patients are deficient in Vitamin B Complex, Vitamin C, Coenzyme Q-10, among others. Information is listed in the first document in the publications section of Treatment Considerations (http://www.immed.org/). Since some vitamins can interfere with uptake and action of certain drugs, they should not be taken at the same time of day as other medications, such as antibiotics or other drugs.

3. Immune Enhancement should be considered. There are various supplements available that can boost your immune system. The Institute for Molecular Medicine has posted some information on immune enhancement supplements that you can purchase over the counter (OTC). They are listed in the first document in the publications section on Treatment Considerations (http://www.immed.org/). Ask your physician if certain supplements may interfere with medications that you are currently taking.

4. Lipid Replacement Therapy is important for fatigue and mitochondrial function. The Institute for Molecular Medicine has conducted several clinical trials on the use of Lipid Replacement Therapy to reduce fatigue and restore mitochondrial function, which is important for general health and recovery from chronic illnesses. Publications on this topic using NTFactor and other lipid replacement products can be found in the publications section of Treatment Considerations (http://www.immed.org/).

5. Antibiotics have helped patients. Although Morgellons is not caused by bacteria alone, bacterial co-infections are highly likely with this condition. Patients have benefited from tetracyclines, such as doxycycline, along with other antibiotics. Many MD patients test positive for Lyme Disease, caused by Borrelia b., Mycoplasma spp., among other infections. Thus an antibiotic regimen has proved useful to suppress system wide signs and symptoms and neurological problems. Some patients have also used anti-parasitic medications.

6. Some Natural Remedies are useful. These are often the same as those used in patients with Chronic Fatigue Syndrome or Fibromyalgia Syndrome and can be found in the first document in the publications section on Treatment Considerations (http://www.immed.org/). Ask your physician if certain supplements may interfere with medications that you are currently taking.

7. Probiotics are a requirement for recovery from chronic illnesses. These are important in restoring gut flora and helping with digestion and maintenance of the gastrointestinal system. Some are listed in the first document in the publications section on Treatment Considerations (http://www.immed.org/).

8. Pain and sleep medications will help you sleep if relaxation activities are insufficient.

9. Ample pure water is essential. It is important to keep hydrated with bottled water.

10. Eliminate alcohol, caffeinated products and excess sugar from your diet. These interfere with the therapy and generally make your condition worse.

Once you have begun to follow the general dietary recommendations, it’s time to consider some specific recommendations for Morgellons. This condition should be considered contagious, although this has not been proven, it may be capable of spreading to family members and pets. It should be considered parasitic, but a known parasite has not been identified in Morgellons. Worm-like forms have been removed from lesions, but their role in the illness has not been confirmed. They may contribute to the sensation of insects crawling under the skin. It may also involve other co-infections, such as Lyme Borrelia b., Mycoplasma species or other bacterial infections. It may also involve fungal co-infections. Morgellons affects multiple organs and tissues, and there is no simple, single treatment that is effective.

The second consideration is that there are important hygienic suggestions that must be followed:

1. Clean everything with strong cleaners, such as Pinesol or Lysol. If you have a dishwasher, use this to wash and sanitize personal items. Clean surfaces and even door knobs with Pinesol or other cleaners.

2. Wash clothes daily with detergent and bleach. Linens, pillowcases, mattress covers and sheets should be changed and cleaned daily. Flannel is a comfortable alternative.

3. Try to keep as dry as possible. Moisture appears to worsen the condition. Use baths only to clean the skin lesions and then only with sea salt, Epsom salt with medicated soap. Moisture control in containers around the house and air purifiers help keep the environment dry. Also, try to keep autos, yard, garage, etc. as dry as possible.

5. Keep hair away from your body, even when washing your hair, and shampoo with Dawn dishwashing detergent or a medicated shampoo, such as Head & Shoulders Intense Therapy. Avoid contact with others to minimize chance of spreading the condition.

Patients diagnosed with bacterial co-infections should be treated with antibiotics. For the types of intracellular bacterial co-infections found in Morgellons patients, long-term antibiotics are usually necessary. In addition, patients with fungal co-infections should be treated with anti-fungal drugs. The Institute for Molecular Medicine has posted some information on antibiotics, anti-virals and anti-fungal drugs. These are prescribed by a physician. They are listed in the first document in the publications section on Treatment Considerations (http://www.immed.org/). Ask your physician if certain antimicrobials may interfere with medications that you are currently taking.

Next is a list some of some OTC products that will help. Keep in mind, however, they may not work for everyone. You may have to come up with a mix that will work well for your needs. There is no known cure for Morgellons, so these are only suggestions that could help improve your condition.

1. Directly treat skin sores with a Calamine spray (Band-Aid, http://www.amazon.com/). Leave the product on as long as possible, and do not rub it into the skin. Also, colloidal silver can be used directly on lesions. Betadine antiseptic solution is a good broad-spectrum antiseptic (http://www.brucemedical.com/)

2. Skin can be treated with acne products or medicated soaps. Some examples are Sapoderm soap (http://shopping.ninemsn.com.au/), oatmeal soap, Clear Skin for acne. Do not rub your skin—lather and rinse. Use towels only once, and then wash them.

sorry to those offended by taking up space going back and forth with frank n berry. no one was saying anything to this guy as he tried to take over this board, so i hoped to make some people think. as i stated before, i rarely post on any board for various reasons. i usually just try to keep up. i am glad you guys are seeing frank for what he really is. now i go back into my reading mode.

Thanks for sharing that and your addition. I was kind of focused on the activists and the CDC coming out of the closet so to speak. Now I realize I kinda had a conglomeration there. Truth is it's all about generating awareness by all means, which leads to more research, more awareness and the ultimate goal.

Yes that is great news. I agree in ref to the Mico. as well as some others in the mix on Garths list.

Be careful, isotretinoin, is the wicked " chemotherapy agent" used in Retin-A.

Think back to MSC's posts and all the "pulling"... this is how isotretinoin works. Google it or look back at MSC's posts for the patent to isotretinoin.
It is highly contagious and a genetically modified organism used in acne treatments or expensive face creams. Avoid it.

I too apologize to the forum for lashing out on Frankenstein in my very first post. No surprises how Ranty took immediate offense and showed her true self, once again...

Hi All, I applaud all who spoke up against Frank n Stein ( hmmm, he is just that a monstrosity made by whom...I don't know). He speaks quite eloquently but it is only a facade to spew out venom against Tamtam among others, and to cause a divison among us. And what is this fascination he has with Tamtam? I have the utmost respect for both Tamtam and Southcity, including PPy1818, Barz, Standby, Sabrina, Al, London, Hartuk, Nadas, Befour, Skytroll among others.
And Frankie, you said that you did not read Ppy's thread, that's okay...we read it and agreed with it as you can see or do you just read your own posts. Randy is not the only one working on doing things for our cause...we all ARE in our own way. Someone of us are working on getting CT scans/ELIZA tests to prove the presence of nematodes (doctors only want to do ultrasounds which are generally useless, except in the acute stage but even that test showed masses in my left leg that was ignored), some are writing letters, some have pending lawsuits, and some of us are too damn sick to do anything. Yes, Randy apears to be doing some "good" for the cause but both of you have superior, condescending attitudes toward everyone on this board. Randy drops in sometimes and tells everyone that they are doing nothing but writing disinformation...and then you come along and stick your head so far up into her butt (can you breathe in there?) that makes it quite evident that you are a "plant" dear sir. Why not plant pansies for your winter months? And Serenity, you initially said that you had little to offer this forum but I find your posts very informative as well as Maggie M, Cyn. Linn, and Mother. And PLEASE do not let dermatologists or doctors prescribe you orap, doxepin, or respirdal unless that is the only way you can get your disability by being diagnosed DOP. Orap is dangerous...look at that link provided by Maggie and Randy, or was it Linn? Frank, say what you want because sticks and stones may break my bones...but the flukes, itching, crawling sensations,and stinging is what ails me...Take care all...and Happy New Year!!!

Hubris is not appealing and your advice is lightweight and ineffectual.

You do not have this disease do you Frankly.

Have you had a Vitamin D assay for instance ?

The answer is No.

I know this, because you promote sunshine for all as a cure.

However, for some it could make the situation very much worse.

Lets hope you are not part of this group or indeed any of your children.

However, it could be a "reward" for your current hubritic state. Time will

tell.

Hi Randy,

Before you begin a rant, I would like you to remember a time, years ago

now, but you recommended using your "trusty swiss army knife" to

remove the layers of debris on your arms.

Consequently, I have always questioned your advice, as I did not want to

have "Self-mutilator" and DOP referenced together in my medical records.

Having said that, I bought the "German" cream you promoted here on this

site, and I have found it to be singularly the most effective product I have

tried.

It is not a cure, but it improves the skin almost immediately and creates

an improved mental state ....... essential for a healthy immune system.

Just one more thing Frankly, notice how I have spaced the lines of text in

my post.

You state that you do not read all messages if they are all in caps or

unpunctuated lower case and that you work a 14 hour day.

Could these facts be explained as a result of a life time eating

junk food, and the resultant "attention span of a lentil" phenomenon.

hartuk

You guys hate anyone who is smart and confident and honest. That just goes without saying.

Marcs cream worked. I used it and reported back. When he decided to be an ass and not send any more although promised in various e-mails I had the chance to not use it and the lesions came back FULL force. I had some Miracle Foot Repair from BB&B on hand and used it and was amazed. For less than nine dollars it worked 100% better than his cream. Truth and nothign more. His breaking his promise forced me to find out more of the truth. So everything happens for a reason.

Until we find out what this is all of us are guessing and all we can do is report back with what we have tried and what has worked for us.

In the beginning when I used my swiss army knife to scrape off the multi layers of a very deep lesions with tons of false skin over it, and found that the debris of this scraping when landing on my naked thigh actually started to eat into the flesh of the thight, I reported this.

I made a discover and asked people to do the same to see if it was just me. So what is your point with that BS lie filled posting?

Just plain dumb..and ignorant and filled with lies. What is new with this site. I never mutilated the skin or dug into the skin so get your facts straight once again. I lightly scraped off the top layers of dead skin and false skin and never cracked any new skin. So again..more lies..lies..lies..lies...and more lies.

I also have had an Ace test a C -reactive protein test, many full blood work-ups, all the tests for Vit D , a biopsy of my lymph nodes and a few other invasive tests to find out what this is. So, I have knowledge. Like it or not. I also have GREAT insurance.

People observe, anyonw who makes sense, anyone who tried to help and not post pages of BS is instantly made fun of and lied about. How sad for these professionals of disinformation to have to do this. How sad since they DO NOTHING to help the cause except send you in the wrong direction with false NEWS about the CDC. I am watching those lies too but find them too funny to even comment about.

To those watching...let it be known that not one person here is REAL enough to use their correct name or give out their number so you can get support.

They all go under false names and care only about themselves and how smart they look by posting tons of disinformation.

All of those that honestly care about this disease post thier telephone numbers and give updates on what we are doing.

Judge for yourselves and read the pages of BS and see the truth.

They think they have you fooled and they do not. I can tell by the tons of phone calls I get and the fantastic people that are now on board with the State/Natioal Lab project..

Thank you to everyone who has called over the past few weeks. I think you are brave, and funny and strong and smart and I am so glad that you have decided to be part of the cure and not part of the problem that exists on this board.

Keep in touch and keep sending those docs my way.

Love ya for it!

See what these guys do not realize is that you guys out there see the truth and when they try and beat me up, you call to see what the truth is. So in reality, they are actaully helping me.

Now that is funny! This whole HATE RANDY thing has backfired on them BIGTIME.

I would like to remind everyone who is affected by this unknown disease to be very wary of internet scammers. Those who troll the internet seeking to defraud people typically look for frightened, desperate people to whom they claim to “experts”, and have a “solution” to your problems.

The simple truths of this disease to date are as follows:

1) Evidence indicates that a disease of unknown origin is spreading among worldwide populations, which effects a wide range of symptoms. The symptoms include skin lesions, rashes, itching of skin, fibers and granular artifacts emerging from skin, insomnia, fatigue, and many others as well.
2) Although the CDC and collegiate research labs are presently working to identify the causal agent of this illness, to date there is no one that has successfully identified it.
3) There is no known protocol of treatment which offers a complete removal of the causal agent from the human system, or completely relieves all of the symptoms.
4) Those who are afflicted with this disease have found by process of trial and error that they are able to significantly reduce the symptoms of this disease by initiating personal action to improve their immune system, and overall state of health. They have also found that the effects of the skin rashes and lesions can be temporarily relieved by topical application of prescription steroids, and a host of cheap and readily available over the counter products. Such over the counter products that contain zinc, or selenium have been found to be effective in minimizing the skin symptoms. A 2% acetic acid diluted solution of white distilled vinegar has been found to dry up the lesions and begin a process of rapid exfoliation of the skin when applied twice daily, for no more than four days, after which the skin is allowed to heal. Vinegar should not be applied to sensitive skin, or children’s skin, and should be tested on a small area of skin for allergic sensitivity before use. Vinegar also works to relive yeast infections which are also thought by many to accompany this disease as a co-infection.

On this site, two very distinct groups have emerged in opposition to one another.

One group hails the Alias Tam Tam as their guru. Tam Tam is a mysterious, anonymous persona who claims to know the causal source of this infection, but will not reveal it to anyone because it is top secret. Although he posts in garbled cryptic verse that emulates European, or Eurasian ethnicity, he operates a very expensive one page, California based web site that offers a streaming video presentation. The presentation uses conjecture and highly suggestive subjective content to elude that he has discovered the causal agent of this disease. The presentation contains absolutely no scientific data which would support this claim. Tam Tam has also posted what can only be considered as a collection of pseudo-scientific babble which postulates the thesis that bacteria are forming intelligent protein crystals in our bodies, which in turn are attempting to form insect body parts within us. Although, bacterium, protein, and nanotechnology may very well in the end be revealed to be the source causal agent in this disease, Tam Tam has only woven a good science fiction story for this audience and has made this thread the laughing stock of the microbiological, medical, and scientific community. At intervals Tam Tam and his other aliases discuss how lucrative their discovery is going to be, and proceed to discuss investment procedures for invest in (in Tam Tam’s own words) “The Tam Enterprise”, which is presently offered through (in Tam Tam’s own words) “The French Nose, and Co. Investment Company.”

It is also to noted that the alias Tam Tam has been associated in the past with a California based web site that offered very expensive products for the relief of the disease’s symptoms which in reality were nothing more than the same inexpensive products that are available over the counter. The original site had to shut down after complaints from the Morgellons community.

Following a splendid, and quite enjoyable flame war on this thread this weekend, Tam Tam is no longer posting the science fiction story. Here is Tam Tam’s post for today.

tamtam wrote:Tests are available!

"While PCR and genetic probes are rapid and sensitive methods for detecting M. fermentans in clinical specimens, the clinical significance of this organism in Chronic Fatigue Syndrome should be determined by further research studies"

Please note if you will, that he has posted a valid block of text that he has cut and pasted from an undisclosed source which simply implies that a medical test is available. He doesn’t give enough information to determine that this has nothing to do with our disease, but he hopes that you will assume this and contact him. He boldly exclaims at the beginning of the post that “ Tests are available.” In scammer language this is called “the hook.”

Please don’t be so foolish as to contact this scammer, or any of his multiple aliases for anything folks.

The other distinct party that I mentioned above is Randy. She claims to operate an organization which has formed a directory of doctors who recognize this affliction as an unknown disease, and are willing to treat us. She has submitted her name, phone number, and has listed her services and future objectives. I have not personally contacted her yet, but I have the impression at this time that she is operating an open and honest, take it or leave service.

As for me, I also have something to offer you, and I will charge you for it. Here it is.

In the short term, take every personal measure possible to improve your health and mental state of mind. Be happy. Make every effort to love someone today. You will receive love in return, which is the strongest medicine known to humankind. Pray.

In the long term be prepared to be come politically active. We may have to force this issue into the light if the CDC does not advise us in a timely manner what the causal agent is, and how to treat it.

OK, now for the payment. If you have read this entire post, you are paid in full. If not, please go back and read it all. You will then be paid in full.